pairofgenes

Archive for January, 2012|Monthly archive page

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And in my spare time…

In Uncategorized on January 28, 2012 at 9:50 pm

Things are about to get nutty- like five day a week workout nutty with very little frivolity in between.   It’s an interesting notion, getting into shape for surgery.  I suppose I’ve never really thought about it because usually when people are having surgery it’s either emergent, or the people I have known have been in good enough shape not to have to concern themselves with weight loss and muscle toning.  Yeah, fuck those guys.   I, instead, begin a regiment with physical therapists, hydro-trainers and pilates instructors who will now join my lovely yoga instructor in an effort to make chicken salad out of chicken shit.  I managed an 8 lbs. weight loss this month, 2 less than necessary to stay on track, but looking at my new workout schedule, it’s unlikely I’ll have time to eat so next month will hopefully show me better results.

So Friday I met with a physical therapist who after hearing what’s on the horizon, came up with a battle plan that involves, as she calls it, endurance.  Beginning Monday I will do pilates two times a week and hydro-training one time per week.  Yoga will remain on Tuesdays and at least one hike will have to be implemented for cardio balance.  In the midst of this training I will have weekly check ins with my physical therapist to make sure that I am on track with my weight loss and strength training to get me ready for my July surgery.   And the cost to me- well I am basically getting the deal of the century because these activities have been deemed medically necessary by my neurologist, my GP and my surgeon dream team.

What is REALLY inconvenient about all of this though, is that it is time consuming, and the rest of my life is not being very accommodating  in regards to stopping to make room.  I still need to help plan a season at the theater, I still need to do some research into academic options for my son who seems to need a change from his current situation, I still need to be on my A game in terms of love, affection, devotion, attention, discipline and compromise.  I still need to manage the larger illness that keeps peeking around the corner because it loves nothing more than a big dose of stress.  But I suppose this is true for all people who face sudden illness, surgery or anything that interferes with life as we know it.  Missie has had to take off five days after every dose of chemo- that’s certainly not her choice.  There are adjustments to be made and favored situations to be sacrificed.  Missie has wisely started planning vacations to look forward to after her chemo and radiation are complete, and that seems like a perfect way to plan for the future.  But I’m not there yet- I am in that uncomfortable place where possibilities seem limited and nothing but the most basic needs of my life can be met, and that is a state I detest.  I have always said that life without something to look forward to can hardly be a life worth living.   But management of one’s health does end up trumping all other matters so that with the exception of my child, my work, and my strategic plan leading up to July, I am more inclined to barrel through than I am to look forward.

My next appointment with the surgeons is at the beginning of April, and hopefully they will be pleased with whatever progress has been made.  Until then I’ll try to post in a greater state of positivity, or rather I’ll try to exist in one- and if not then I’ll just bitch and moan and fling myself around as my mom would say.  Wish me luck on this endeavor- I feel like I’ve set out to climb a huge mountain and it will only lead me to base camp for the real climb.  But here I go- up, up, up…

 

Not nearly as fun as it sounds.

In Uncategorized on January 13, 2012 at 4:24 pm

I am clearly not the most mature person in the world because I initially found my breast MRI rather hilarious.   For the record, the MRI and Mammogram came back clear- so I can stay on my clinical trial until its completion and the surgery will be set for the beginning of July and I won’t have to see any more doctors on that front until late March or early April.  But this MRI  is really one of the most awkwardly funny things I have ever undergone.  And trust me- I’ve had tests from my top to my toes and every private bit in between.

For those of you who have yet have the pleasure of a breast MRI, allow me to explain.  Unlike a mammogram where you stand up and they adjust the boob smasher to fit you for imaging- and seriously- they flatten those suckers out to the point where I am pleasantly surprised when they regain their natural appearance- but with an MRI you lay face down on the machine in which there are two large cut out squares where your boobs hang through.  Just try placing these pendulous masses into the squares and not immediately breaking into “do your boobs hang low, do they wobble to and fro:, etc..”.  But as I was at the very classy women’s imaging center at UCLA, I thought it unwise to be a smart ass.  Now- the not so nice part of this MRI- and again, keep in mind, I am VERY comfortable in an MRI machine.  I have a minimum of one per year to track my MS progression and while undergoing the Estriol clinical trial I have been having them as often as  every three months- so I’m all good with the banging, siren blaring, enclosed tube of torture.  I usually fall asleep after an initial period of anxiety which I get through by imagining Santiago laughing hysterically at something.  It works like a charm.

But there was something about the body position on this MRI and the fact that to keep my arms in place, the technician strapped them in, so it was rather like laying face down in a straitjacket that had cutouts for my boobs.  I could also feel my breath quicken as I was lying on my stomach and so each inhale raised my body away from the table slightly.  I was anxious in a way that is unusual for me and of course, being who I am, I analyzed the hell out of it once I left the doctor’s office.  Over the week that followed, there were numerous events that skirted around the periphery of the upcoming surgeries, and I allowed each thing to make me more and more anxious.   The MRI- which seemed like a funny story to tell, settled in as the first of a long line of things that made me uneasy.

And here’s what I came to.  I am not comfortable being afraid or being perceived as fearful or trepidatious when it comes to medical tests- or anything medical for that matter.  I want everyone to look at me and say, “wow- she’s so tough and none of this seems to phase her and isn’t she superwoman?”  Most of all, I want to believe it of myself.  But I get to the end of a week like this one that began with the bondage MRI and will end with setting dates to sign consents, choosing who holds my power of attorney and  figuring out my will and I think that the title of superwoman is something I might have achieved once upon a time, but for now I’m just going to have to settle with anxious lady with less than average resolve.

And suddenly I feel relief.  The guard slips a bit, I tell my friend Rachel  that I’m afraid- that this might complicate my MS in an irreversible way, and that the idea of menopause at 40 totally blows because my doctor said I might find I don’t have the same sex drive- and sorry mom and dad who are reading this- but that happens to be something of which I am a HUGE fan.  And once I say it out loud- pass it on to someone who will love me even if all of these things are true- it makes it less potent, less painful.  Less of the whole truth and more just another side of all of the aspects that come into play with something of this magnitude.  So I post this because sometimes I have to admit that it’s not a walk in the park, so that someone reading this who is dealing with the same thing doesn’t feel like they have to be superwoman, so I don’t have to be superwoman and instead I can ask for a cup of tea, a kiss on the forehead and a reminder that it’s okay to not always find the humor in a shitty situation.  But come on- how can one not giggle at “do your boobs hang low?”

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New Year’s Resolutions

In Uncategorized on January 1, 2012 at 7:36 pm

I am an optimist by nature.  It follows then that every year prior to this one, when the clock would strike midnight on New Year’s Eve, I would renew my hope, fill my coffers with positivity and bank on the year ahead of me.  The last few years, I have been happy to see the years wrap up- it’s been a rough road, some rougher than others, but I would step into the new day convincing myself that whatever was ahead would surely be better than what I had just left behind.  This year is a bit strange in that regard.  When 2011 began, I didn’t know what a BRCA gene was, my sister hadn’t found her ‘lump’ yet and all July meant to me was that camping in Yosemite was in the cards.  This year, Missie still has half of her chemo to complete and her radiation.  We both have to fight the weight loss battle for the sake of healthy surgeries yet to come, and I have to be essentially taken apart and rebuilt in the beginning of July.  So this New Year’s I felt myself not resolving to improve my life, but rather resolving to get through it- to stay focused on well-being, to make my body as strong as possible between now and July, and to remain cautiously optimistic that all will be well when 2013 rolls around.  I will hence forth refer to 2012 as the year stumbled through gracefully.

A quick overview of my week of doctor visits- which introduced me to the ‘dream team’ of surgeons, and not just because they are all total babes.  I had already met the breast surgeon, Dr. Foster, who referred me to Dr. Tseng, the Plastic Surgeon and Dr. Karam, the gynecologic Surgeon.  The Plastic Surgeon spent a good hour with me, going over my options but ultimately agreeing with Dr. Foster’s assessment of a bilateral mastectomy and flap reconstruction.  As you may recall, this is the surgery for which one needs to be an optimal weight, so I also started that conversation and I have a good 35-65lbs. to lose prior to July.  I’ve done it before, and although I don’t love the idea of not having food to fall back on in a time of stress, I am very keen to have boobies made of my own tissue- so if choosing between food and boobies, I’ll go for the latter.  I know the peanut gallery agrees.

Then onto Dr. Karam, the gynecologic surgeon, who in fact gave me a lot of information- I’d even go so far as to call it good news- in the midst of this steep learning curve.  He is the first doctor with whom I’ve met who has actually had other patients who have both the BRCA1 and the BRCA2 genes.  He explained that this is most likely due to the fact that he practiced medicine in New York City and at Cedars Sinai in Los Angeles which both have much larger Ashkenazi populations.  That accounts for the high number of BRCA patients.  He said that although having both isn’t ideal- that the percentages are not added on to one another.  In other words, if the BRCA1 leaves me at an 87% risk for breast cancer and the BRCA2 leaves me at a 75% chance risk, that doesn’t mean that I have a 162% chance of getting cancer.  (yeah, maybe I had to use a calculator to add those numbers- shut up).  With that said, he cannot say definitely what my chances are but he would put them about 10% higher than average- which still makes it 97% that I’ll develop breast cancer.  BUT, of course, that’s why I’m opting for the surgery.  And here’s where even more good news comes into play.

Because women have historically had difficulties with hernias post hysterectomy, they began performing them laproscopically.  This way, they do not cut through the muscle and weaken the abdomen.  I had assumed, since they were cutting into my abdomen to take out what I think we should now call my “useful paunch”, that they would just go through the abdomen for all of the surgeries.  But, it turns out that during the flap surgery, they just take the mushy part of the tummy- the “useful paunch”- and they don’t cut into the muscle at all.  So although having both the double mastectomy and hysterectomy all at once seems daunting it isn’t nearly as invasive as I had feared.

The surgery does have a 4-6 week recovery time, but that is actually based on the reconstruction of the breasts, it takes time for them to make a nice new home and evolve from the useful paunch into the perky rack.  Yeah, you heard me, PERKY RACK!  At this point I think the only disagreement that Dr. Tseng and I will have will be about cup size- he’s all about proportions and I’m all about not having to wear a bra if I so desire.   I’ve had one on for the last twenty-nine years, enough already.   We agreed to figure that out once I lose some weight.  I’ll meet with him again 8 weeks before the surgery to assess size etc.  One last cool thing on the boobie front.  It turns out that they have to build nipples and that this is actually done in a separate procedure.  There are two follow up surgeries, one for nipple building- you know you wish you got to write that and say it- and one for making final adjustments and tattooing pigment onto the nipple.  And when this came up- I thought JACKPOT!

I have always wanted a tattoo- so of course because I have no shame or scruples I immediately asked Dr. Tseng if I could get something besides the standard pink pigment.  He was completely nonplussed.  Have I mentioned I love this dude.  He said that the choice of what to have in place of my original breasts is a totally personal one and it can look like and be anything I wish.  This is the first scenario in all of this where I actually felt like I was being given a choice and so I have begun considering what this might look like.   Dr. Karam- the genius gynecologic surgeon suggested one-eyed happy faces.  I have something a bit more subtle in mind- more on that later.

So armed with all of this info. and having begun the process of signing consent forms and blocking out July for recovery purposes- I head into 2012 knowing that it’s going to be difficult.  But recently Missie and I were wrapping presents for the kids of some of her employees and she commented on the fact that neither one of us have ever really wanted for anything.  Yes, we’ve had a rough go of it in the health arena, but really, she said, we’re very lucky.  Totally offhanded- and with absolutely no irony, she referred to us as lucky.  And I thought of that again as she and I ran around Las Vegas last week gambling and hanging out with the family.  I thought about it again as we sat last Thursday seeing the touring production of Wicked with our mom and our Cousin Sarah, laughing and crying and abandoning every sense of cynicism to be enveloped in the pure joy of a big, fat musical.  But mostly we are lucky because we are not sitting around waiting to die.  Waiting for the elusive cancer to come and get us and take us away from all of this luck.  I have known healthy people who seem to spend their lives waiting to die- I’d much rather be “healthy challenged” (I don’t care for the word sick) and enjoy the hell out of everything.  So while 2012 may not be easy- based on Missie’s assessment, I’m thinking it may be lucky.

Happy New Year to all.  Wishing you happiness, love, good health and good luck in the coming year.